POS1403-HPR LONGITUDINAL PILOT-STUDY EXPLORING CHANGES IN EDUCATIONAL NEED AMONG PATIENTS WITH NEWLY DIAGNOSED AAV USING ENAT
Authors: S. Brolin, I. Gunnarsson, S. Pettersson
Journal: Annals of the Rheumatic Diseases (2023)

<h3>Background</h3> Previous studies have shown that disease duration associate with an increased need of educational support in ANCA associated vasculitis (AAV) [1]. Shorter disease duration showed to significantly increase educational needs although not yet investigated whether the disease duration or time itself is the deciding factor. Longitudinal studies using the Educational Needs Assessment Tools (ENAT) are in general scarce. <h3>Objectives</h3> The aim of this pilot study was to explore how educational needs changes over two years among newly diagnosed patients with AAV using ENAT. <h3>Methods</h3> This pilot study included longitudinal data from the Rheumatology and Nephrology clinics at the Karolinska University Hospital in Sweden during 2009-2022. Inclusion criteria were being diagnosed with AAV (GPA, MPA and EGPA), minimum age of 18 years and literate in Swedish. Exclusion criterion was cognitive impairment interfering with literate capabilities. Disease activity was estimated using Birmingham Vasculitis Activity Score version 3 (BVAS). Educational needs were captured by patients’ answers to the ENAT questionnaire at baseline and after 24 months. The ENAT consists of 39 questions, presented as total ENAT and seven domains (managing pain, movement, feelings, disease process, treatment, self-management and, support) each containing 4-7 items (item answers ranging from ’not at all important’ = 0, to ‘extremely important’ = 3). Paired samples t-test was used to compare means between the two timepoints. <h3>Results</h3> 17 individuals (47% men) with GPA (n=15) and MPA (n=2) completed the questionnaire. At baseline mean age was 51 years, ranging from 20-66, and mean years of education 14.6. Mean disease duration at baseline was 0.2 years. All but three were newly diagnosed at baseline and 3 was diagnosed the year before inclusion. All individuals had an active disease, with a mean BVAS of 15.2, range 1-25. The mean total ENAT score decreased from 83.5 at baseline to 72.6 at 24 months (p=0.04) (Table 1). Change in individuals total ENAT scores ranged from +10 to -73. Educational needs decreased within two of the seven domains, ‘Self-help measures’ 15.4-12.9 (p=0.03) with individual score change ranging from +5 to -13 and ‘Treatment’ 16.8-12.1 (p=0.005) with individual score change ranging from +7 to -21 (Graph 1). Domains indicating lower educational needs at baseline were still low after 2 years. Over time the domain with highest educational needs shifted from ‘Self-help measures’ at baseline to ‘Disease process’ at follow-up. <h3>Conclusion</h3> This pilot study demonstrates that patients newly diagnosed with AAV expressed high educational needs at baseline compared to previous studies on both patients with established and newly diagnosed AAV [1]. The educational need decreased over time in total and within two of the domains but was still high after 24 months. Our findings point to the fact that patients need continuous educational support during the first years of diagnosis. To further explore patterns and clusters of changes in educational needs more data is needed, including data on what and how information and patient education is received. <h3>Reference</h3> [1]Brolin S, Welin E, Lövström B, Bruchfeld A, Gunnarsson I, Pettersson S. Exploring the educational needs of patients with systemic vasculitis using the educational needs assessment tool. Rheumatol Adv Pract. 2022 Aug 11;6(2):rkac062. doi: 10.1093/rap/rkac062. PMID: 35993015; PMCID: PMC9382267. <h3>Acknowledgements</h3> We are grateful to the participating patients, and colleagues assisting in the data collection. <h3>Disclosure of Interests</h3> None Declared.